It has been too long between drinks. In this instance, I’m not apologising for failing to catch up with friends, family or colleagues, instead it’s because I’ve neglected this blog.

I do hope the WordPress Gods forgive me.

My interest in exploring the way people with disability are represented in news media and the role journalism education can play in it, and how we can build a more inclusive society has not faltered. In fact, the discussion and the research has continued in other places – if not this blog.

For one, it has been great to be a part of founding the University of Wollongong‘s Disability Research Network (DRN) over the last 12 months. I’ve had the pleasure to work closely with co-convenors Dr Shoshana (Shooshi) Dreyfus and Dr Lyn Phillipson. They are leaders in their fields, and it is an honour to call them colleagues and friends. Together, under the leadership of Shooshi, we have started to build a community of people interested in disability research, projects and issues, and, importantly, it is centred on people with lived experience of disability.

Over the past year, the UOW DRN has provided a space for an eclectic group of people to gather, explore and discuss disability research and issues.

I will take the reins as the UOW DRN leader from Shooshi next year, and I look forward to working with all the members of the network – existing and new. A website for the DRN is in the works, but anyone interested to learn more and/or taking part can do so via our Facebook page.

Image: A local disability theatre group perform a play about the daily prejudices faced by people living with disability at the Wan Smolbag Theatre and Youth Centre, Port Vila, Vanuatu, February 2013, photographer Graham Crumb for DFAT

A call to put the word ‘disability’ “front and cemntre” has, unintentionally, fuelled debate about ‘people-first’ versus ‘identity-first’ language. The disability activist Lawrence Carter-Long recently unveiled ‘Disability. #SayTheWord’ with a Facebook post-come-campaign launch.
Carter-Long was writing in the wake of President Obama’s State of the Union address, where there was no reference to ‘disabled’. He challenged his Friends and Followers: “It’s 2016. “Disabled.” Go ahead. Say the word. It’s way past time to dump the silly euphemisms and not be shy about getting good and righteously pissed off about being omitted … Put disability front and center. Consciously. Intentionally. Often. “Disabled.” It’s okay. Simply #SayTheWord. Sing it. Own it. Please.”

It was a call to action. It was about, as Carter-Long wrote in a follow-up post: “The President shouldn’t be afraid to say ‘disabled’. Inclusion shouldn’t be an afterthought either. He and every other elected official should feel like we’re a constituency that they are going to have to reckon with. Businesses too. Schools as well. The movies we watch and the TV shows that are supposedly about “us” too.”

The initial post drew many supporters, but took an unexpected turn when some comments interpreted Carter-Long’s challenge as a question of ‘people-first’ versus ‘identity-first’ language.

Time to move on from ‘people-first’ language?

One reply stated: “I may be part of the minority, but I don’t want my son labeled as ‘disabled’ – he’s human, he’s male, he’s an adult, he’s unable to walk without assistance, he’s dealing with brain injuries, he’s funny, he’s loving, he’s compassionate – but he’s not ‘disabled’. He’s a person living with disabilities.”

Another wrote: I think I agree with (above). I am a complete, complex human. Part of that complexity, part of what makes me whole, is that I live with a disability. I prefer “person first.”

Carter-Long responded: “Language – along with understanding and evolution – marches on. What seemed progressive decades ago can be regressive now which is, I reckon, as it should be.”

Another wrote: “I will never understand the idea that being disabled is negative. I am autistic. I am disabled. This is my reality. To say that I need to call myself a person with a disability automatically puts the disability on a lower footing.”

The social model of disability

Advocates of ‘people-first’ and those in favour of ‘identity-first’ both claim foundation in the social model of disability. The social model, in short, says people with physical or developmental impairments are ‘disabled’ by a society that does not recognised them and what it takes for them to be included as productive, active and valued members of the community. The common stance unintentionally muddies the water for those tasked with fair and accurate representation of people and issues – like journalists.

As a journalism lecturer, I include lessons and discussions on the way disability is presented in news media. One of the discussions with my students is about the use of ‘people-first’ language. Developed in the early 1970s, it has a long history, and, essentially, it seeks to draw attention to the person ahead of the disability. It encourages a ‘see the person, not the disability’ approach.

The Australian approach

Governments across Australia and the globe, along with NGOs, have established media guidelines on disability, and the use of ‘people-first’ language is a staple instruction for many. Australia’s peak disability advocacy organisation is People With Disability Australia (PWDA). The PWDA web site includes a section on terminology, where it states preference for people-first language.

PWDA is far from alone in its use and encouragement of people-first language. Kathie Snow, for example writes: “People First Language puts the person before the disability, and describes what a person has, not who a person is. Are you myopic or do you wear glasses? Are you cancerous or do you have cancer? Is a person ‘handicapped/disabled’ or does she have a disability?”

The United Kingdom has long preferred the use of ‘disabled people’ over ‘people with disability’ and it has the media guidelines to match. Likewise, the Deaf and autistic communities have adopted identity-first language.

Opposition to people-first language

Autism Mythbuster’s Jim Sinclair wrote in 1999 about “Why I dislike people-first language”. He declared: “I am not a ‘person with autism’. I am an autistic person.”

Sinclair narrowed his opposition to people-first language to three points:

1) Saying ‘person with autism’ suggests that the autism can be separated from the person. It cannot.

2) Saying ‘person with autism’ suggests that even if autism is part of a person, it isn’t a very important part.

3) Saying ‘person with autism’ suggests that autism is something bad – so bad that it isn’t even consistent with being a person.”

Haller pointed to the ongoing debate about people-first versus identity-first language and urged journalists to “carefully traverse a variety of disability terminology”, and concluded: “The one thing that both sides of the terminology discussion agree on is that language about disability is important, so journalists must clearly understand language preferences when reporting on disability issues.”

I don’t have a disability, but my son has cerebral palsy. I’m a PhD student, I write about the way disability is represented in Australian news media, including a recent article on disability representation in media coverage of the Americans With Disabilities Act and the National Disability Insurance Scheme.

Nothing about us without us

One of the first disability-focused books I read was James Charleton’s Nothing About Us Without Us!, published in 1998. Its message was to ensure decisions that affect a group must be reached by full and direct participation of members of that group. If follows, that journalists and journalism educators should ask ‘people with disability’ or ‘disabled people’ the language they believe best represents them. Positively, discussions with and formal feedback from my students has revealed they are willing participants in the discussion, and are proving to be proponents of change in workplaces in and outside journalism.

“Person first. Person last. Doesn’t much matter. What we’ve got to do is make sure the words ‘disabled’ and ‘disability’ – and the people they identify – are in the mix. Somewhere? Anywhere??? No. Every-freaking-where! Nothing without us. Period. You dig it?” he posted.

The use of so-called ‘inspiration porn‘ in news media continues to spark debate.

The images of a young boy, Fin, who has cerebral palsy, competing in an athletics event is the latest story to feed the discussion. Fin’s participation in the race, one of many thousands I presume happen at schools across the globe every year, was considered newsworthy by 7 Local News Sunshine Coast in Australia.

There is a part of me that thinks the availability of the video (the simple fact it existed) had a hand in the decision to air it. I know that sounds obvious, but consider the days when we didn’t have the capacity to shoot and share our children’s every event movement, success, and/or mishap. TV news, not too many years ago, relied on a news director and/or chief of staff choosing to allocate limited resources (i.e. reporter and camera operator) to cover a story.

Nowadays, instead of the news crew going to the news, the ‘news’ often comes to the newsroom. So, ease of access can play a part in the decision to run it as a story. If the vision wasn’t there, and if the news director didn’t know about the race, Fin’s participation in the event would have remained anonymous to all but those who attended. But the vision was there. Who shared it? Fin’s mum, or the Cerebral Palsy League, or someone else? It’s not clear.

This is where the question of inspiration porn arises (at least in this case). We know the charity model of disability exists. We know, just by watching the story, that disability organisations, like the Cerebral Palsy League and the Cerebral Palsy Alliance, rely on charity. We also know cute kids, doing cute and/or ‘inspirational’ things, help raise money.

Often, the news media finds itself at the intersection of charity and inspiration. As a former news reporter and news director, and now journalism lecturer, I can’t help but feel for journalists and news organisations that are criticised by disability advocates (including me) for creating and publishing ‘inspiration porn’. They are forced to negotiate a space where on one hand they are asked by people with disability not to cover a story simply because it features disability (inspiration porn), but on the other hand are asked to cover a story because it is about disability (charity).

As said, I’m none the wiser as to how the newsroom came across the story, but the mention of the Cerebral Palsy League and the funds raised for ‘life-changing equipment’ does place the story within the charity model of disability.

If we are to address ‘inspiration porn’, we need to look at the charity model of disability. If we consider the way disability is presented by those in positions of influence, like disability service providers, maybe news organisations will be less inclined to present something as inspirational simply because disability is involved.

Every now and then, however fleeting, you get the feeling that what you do matters. I had one of those feelings the other day. Former student of mine, Matt Baxter contacted me for advice on an article he wanted to write about disability and inclusion. Below is Matt’s article. He has offered it up for publication in a couple of places, but, at this stage, hasn’t had much luck. Please take the time to read it and, if you’re so inclined, share it.

WHEN it comes to creating a more inclusive society for people with disability, it’s true that government has an important role to play, as do agencies that offer disability support. But there is a third stakeholder that needs to buy in if the NDIS and related reforms are really going to make a difference to the lives of people with disability, their families and carers in Australia: you.

It’s 1955. A man boards a bus at a station in the United States. He walks straight to the rear of the bus, while his fellow commuters take their seats up front. He’s not being polite. He doesn’t prefer the back seat. He is part of a minority group.

It’s 2015. A man drags himself slowly up the stairs of an Australian railway platform as fellow commuters hurry past or occasionally watch on, bemused. He’s not drunk. He’s not making a statement. He is part of a minority group.

So what do these two stories have in common? Besides featuring two men willing to endure horrendous mistreatment in order to catch public transport (something most of us take for granted – when we’re not too busy grumbling about it), these stories highlight the absurdity of the discrimination still facing people with disability today.

While the thought of a person’s skin colour dictating their seat on a bus is enough to make any modern Australian shudder, we remain largely apathetic towards the many similarly unfair situations people with disability live with every day.

It may not be as blatant as the segregation experienced by African Americans in the 1950s. There may not be signs labelling train stations for “able-bodied patrons only”. But what other message does this send to someone with accessibility requirements?

If you think our society is better as a result of the successfully fought battles for racial and gender equality, then you have no choice but to feel moved when you know people with disability, our nation’s largest minority, are still not afforded the basic rights enjoyed by others.

You might think the issues facing people with disability don’t affect you. And maybe they don’t, at least not right now. But the reality is you’re far more likely to be affected by disability at some point in your life than you are to wake up tomorrow a different gender or race. Even if you never personally experience a disability, the chance your future son, daughter or loved one will are significant (around one in five Australians currently live with disability).

Of course, the easiest solution is to not think about it. In the same way we forbid ourselves from imagining the horror of a child being kidnapped, or a spouse assaulted against their will, we refuse to consider a life where we’re restricted to a wheelchair, unable to work, or incapable of holding our loved ones. We assume (correctly) that our lives would be forever altered, in many ways for the worse, and to imagine such a future is just too hard.

But what if there was another way, where the prospect of living with disability or caring for someone who does wouldn’t be the nightmare scenario you picture now?

Since then, governments have introduced several initiatives that have brought us closer to an Australia that truly values better outcomes for people with disability. The NDIS (National Disability Insurance Scheme) in particular is an historic reform that puts control firmly in the hands of the people who should have it: those living with disability. If all goes to plan it’s going to be incredible to watch the transition from a fragmented system in which people with disability were told what to do, to a framework that asks them to make choices about what they want.

But legislation, schemes and government commitments can’t do it all. If the NDIS is going to work our entire society needs to take responsibility for meeting its potential.

We all know the argument: there are a million causes to care about, and only so many hours in a day. That’s what’s so great about being part of creating an inclusive society – it really doesn’t require a lot of effort. Here are three easy ways you can start contributing to a better society right now:

Empathise

This one’s easy; it’s literally just picturing yourself in the shoes of someone with disability. If you struggle with that, try imagining your son or daughter being born with disability. Would you be satisfied with the treatment they’d receive in our society? Could you remain indifferent as they faced near constant discrimination simply because of part of who they are?

Treat people the same

You don’t have to speak to every person with disability you see. But you should treat everybody the same way. If you’re the kind of person who loves talking to strangers on the street then talk to people with disability too. If you’ll only speak to an unfamiliar person when they approach you then treat your interactions with people with disability that way too.

Don’t let discomfort deter you

It doesn’t make you a monster to feel uncomfortable around someone with severe disability. In fact, it’s a perfectly reasonable response when you consider the societal attitude towards people with disability historically. But you can overcome it. After all, at one time the majority of people would have been very uncomfortable at the sight of two men holding hands, a female boss chastising a male subordinate, or a black man sitting with a white woman. Ridiculous? Yes. True? Sadly. Wouldn’t it be amazing if discomfort caused by talking to a person with severe disability could be added to that list?

The civil rights movement was made stronger when people of all colours joined together. The women’s suffrage movement bolstered by the men who marched. And the movement for a more inclusive Australia will be made possible not just by the actions of governments, disability support services and people with disability, but by the grassroots efforts of those who may not have a personal reason to care, but who realise a more inclusive society is a better society – for people with disability, for Australia, and ultimately for everyone.

It’s one of the big issues I’m working on a journalism educator. Journalism students are being encouraged to capture the voice of PWD. It has, for too long, been the default position to interview the partner, the parent, and/or the carer of the person with disability. It needs to change. Journalism’s grassroots seem a good place to start.

Over the summer, select episodes of the New Zealand television series about disability, Attitude, have been screening on ABC television. At the same time, a crowd-funding project is underway to make an Australian version. Graeme, Samantha and Carly‘s reviews are already online.

The fourth episode focused on Joel Fernandes from Timor Leste, and his partner Helen Nixon. Much of the episode traces the relationship between the couple and ends with their wedding in Melbourne. [You can see the episode here.]

Fernandes works at the Disabilities Association of Timor-Leste and uses a wheelchair. He explains at the beginning of the program that access for most Timorese people with disabilities is very difficult, particularly outside of the capital Dili. He then explains how he met his now wife in Australia, when he was speaking about disability issues.

As a long term campaigner and advocate for disability issues, Fernandes worked…

We also live in a society where access and inclusion remain aspirations for some, and foreign concepts, let alone practices, for most.

For example, it is seemingly OK to limit a person who uses a wheelchair to attending the football or a live show with just one friend, relative or assistant. Our stadiums allow the person using the wheelchair to sit with only one other person.

Below is a photo of our son, Mac, and a mate at an AFL football match in Sydney. Gina has grabbed a vacant seat of the far right, but it wasn’t really ours to take. The standard operating procedure is one spot for the person using the wheelchair, once spot for whoever they are with.

My son, Mac, sits with a friend, and his mum, Gina, at an AFL football match in Sydney. In most instances, there is only an allocation of one spot for the person who uses the wheelchair and one other.

God forbid a person who uses a wheelchair to access society has more than one friend, or more than one family member they want to share the experience.

Inclusion needs to move beyond concept and be put into practice. However, if a Unanderra man needs to campaign for 20 years just to be able to access public transport, it is fair to question government and broader society’s understanding of access and inclusion.

As Australia heads towards the nationwide implementation of the National Disability Insurance Scheme (NDIS), and hopefully greater understanding of the societal benefits of people with disability being active and productive members of our community, there is hope things will change for people with disability. The NDIS, at its heart, is about access, it is about inclusion. While it will not ban steps at railways stations, or provide more seating at football stadiums, it will shine a long overdue light on the role people with disability can play in society when the barriers are removed.

I had the pleasure of knowing Stella only through online comms, editorial back and forth, and her preparedness to support a new inclusive dining program we’re rolling out of the University of Wollongong.

She leaves a massive hole in the disability activist ranks, among others, and this hole will be immediately obvious at the ABC.

The blow of the RampUp closure was somewhat lessened by the knowledge Stella was still in the ABC ranks and tasked with keeping disability issues and people with disability present across the national broadcaster’s multiple platforms. Stella was more than up to the challenge.

The ABC must now declare its ongoing commitment to covering disability issues and PWD, and to make sure the role Stella held continues and flourishes.

In 2011, leading global media players gathered at the Newseum in Washington D.C., to discuss the Advocacy Journalism in the Digital Age. Three years is a long time in the digital space (consider — Instagram was launched late 2010), but the words of the conference keynote speaker, Monumental Sports and Entertainment CEO Ted Leonis, could easily be said today, so relevant they are to the current state of digital journalism.

“Everyone is a journalist now, individuals will become their own media companies,” Leonis said. His words resonate across the public sphere but most loudly within the advocacy journalism debate.

Advocacy journalism has a long history — whether known as Yellow Journalism, Radical Journalism, Critical Journalism or Activist Journalism, it dates to the early 19th Century. Some contend all journalism is advocacy journalism. Author and journalist Matt Taibbi told Rolling Stone magazine: “No matter how it’s presented, every report by every reporter advances someone’s point of view. The advocacy can be hidden, as it is in the monotone narration of a news anchor for a big network like CBS or NBC (where the biases of advertisers and corporate backers like GE are disguised in a thousand subtle ways), or it can be out in the open…’

While advocacy journalism, defined by Robert Jensen as “ … the use of journalism techniques to promote a specific political or social cause,” is far from limited to digital space, it has thrived within the blogosphere where the classic tenants of journalism – objectivity and neutrality — are often sidelined or ignored at the expense of personal or community priorities. Dave Berman, writing for the Indy Media Centre, says journalists should not be bound to the tenants, and they are no longer “universally observed.”

“If we are ever to create meaningful change, advocacy journalism will be the single most crucial element to enable the necessary organizing,” he said.

Change through self-representation

Among those seeking “meaningful change” and embracing the capacity to self-publish and, importantly, self-represent are minority groups. Included in the ranks of those keen to negotiate a new way other than the “mainstream” are people with disability. While some online entities, Ouch! on the BBC in the U.K. for example, have successfully embedded disability-focused and produced content within mainstream outlets, others have struggled. In Australia, people with disability have launched a crowdfunding campaign to establish a new website to replace RampUp, a site formerly run and funded by the national broadcaster but now mothballed as a cost-cutting measure. RampUp was “ … the Australian Broadcasting Corporation’s website featuring news, discussion, debate and humor for everyone in Australia’s disability communities.”

Dr. George Taleporos is leading a campaign to give people with disabilities a voice in Australian media. Photo by Chris Garbacz.

The proponents of the crowdfunding campaign are unabashed advocacy journalists and supporters. Dr. George Taleporos is the driving force behind the campaign. “This project is designed to ensure that the important perspectives of people with disabilities and our families are heard and to make real the disability rights motto of ‘Nothing About Us, Without Us’,” he said. Taleporos and his colleagues are among a growing group of people frustrated by mainstream representation of minority groups and their issues. The once silenced “media critics” have found a space to be heard and to operate beyond traditional media frames of diversity.

“Once relegated mainly to the alternative press, where scraggly anti-establishmentarians would rail against ‘the Man,’ as represented by whatever major metropolitan newspaper was close at hand, these days documenting the sins of the media is a favored activity of cable pundits, think tanks of the left and right, and an ever expanding multitude of bloggers,” Dan Kennedy wrote in Nieman Reports.

Taleporos and other advocacy journalists are driven by a desire to redress the news agenda and public discourse. Despite the considerable consumer power of people with disability and long-established media guidelines on disability, mainstream news media remains inclined to follow the well-trodden path of stereotypical representation of people with disability and disability issues.

A campaign is under way to crowdfund a new advocacy journalism website by people with disabilities.

The Convention on the Rights of Persons with Disabilities and the Optional Protocol was adopted by the UN in 2006. The Convention was the result of decades of work by the UN to “… change attitudes and approaches to people with disabilities.” The UN says the Convention, in line with the widely adopted Social Model of Disability, “… takes to a new height the movement from viewing persons with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.”

The Convention has been signed by 158 countries, and there are 147 partners, and it has eight guiding principles.

1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
2. Non-descrimination
3. Full and effective participation and inclusion in society
4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
5. Equality of opportunity
6. Accessibility
7. Equality between men and women
8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities

Embedded within these guiding principles are elements that serve to inform journalists, editors and newsrooms on the representation of people with disability. Article 8 of the Convention is most relevant to the news media, as it deals specifically with awareness-raising and stereotype.

As framers, agenda-setters and gatekeepers, reporters and editors are uniquely placed to deliver on the aspirations of Article 8. It says, in part, that signature States have a responsibility to “… combat stereotypes, prejudices and harmful practices relating to persons with disabilities,” “to promote awareness of capabilities and contributions of persons,” and encourage “all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention.”

People with disability and those who research their representation in the news media are consistent in their observations about the way disability is presented. Professor Beth Haller is a world leader in the field and helped develop the “media models of disability.” Haller and colleagues claim the news media are still, despite decades of disability activism, inclined to represent people with disability as tragedies or heroes, and to use language and imagery that serves to embed stereotypes and put at risk members of an already vulnerable community.

“I think media are important to all disability rights efforts because if the media are misrepresenting the disability community, then the general public has wrong information and may not support rights efforts,” she said.

Students learning reporting need lessons on covering people with disability. Instructors can get creative in exercises focused on broadening their perspectives. For instance, interacting with the Save ABC RampUp Facebook group, dedicated to fair and accurate depiction in the news media and self-representation, reveals important themes for students to understand.

1. Represent (make sure every show, every ad, etc. has people with disability) and don’t use sadomasochistic language (“suffers,” “bound,” etc.).
2. Use common sense — that’s subjective, but don’t default to “heroes” or pity.
3. Include people with disabilities in the media without always focusing on the disabilities. “The ‘wheelchair-bound’ woman, is actually a mum, an officer worker, a volunteer, a sister, an aunt, a daughter, who happens to use a wheelchair. The “Blind Lawyer” is actually a man, a person, a father, etc., who happens to be blind.” People with disability should have voice on a range of topics, not just disability-related topics. One in three households has experience with disability, so people are not “novel.”
4. Often young journalists use appropriate, people-first language — “person who uses a wheelchair” — but an editor, generally someone who is at least 25 years older, changes “person who uses” to “wheelchair bound” because that was the language he learned.
5. “I can do without the ‘inspirational porn’ of disability. We are not heroes or pity cases. We all get out of bed the same way, or near enough, as everyone else. We eat, we work, we participate in community and working life, just like anyone else, in our own way.”
6. Cover people with disability on on a wider range of topics, not just assisted suicide or the Paralympic Games.
7. Stop saying “suffers from.” Say, “living with.”
8. Do not represent disability as if physical disabilities are the only ones.
9. Understand that people with disability live constantly with the “hero” or “brave sufferer” or “charity case.” Resist the media stereotypes of putting people in the pit or on the pedestal.
10. If we write for your publication, don’t dumb our language down. Look to good publishers like Daily Life, The Guardian and ABC Ramp Up (now defunct). Get someone with a disability to write it! We’re underemployed and are often spoken about, not listened to.

Australia has honoured veteran Amercian comedian Jerry Lewis with an AM, a Member of the Order of Australia, for his work in raising funds for people living with Muscular Dystrophy. He would call them ‘sufferers’. Much has been written about Lewis’ work. Much of it is full of praise, but many people with disability have a different take on it. They claim the cash has come at too high a cost.

Cassandra Phillips addressed the issue in her 2001 paper, Re-imagining the (Dis)Abled Body, published in The Journal of Medical Humanities. The section below highlights PWD concerns with Lewis, and the charity/pity/medical models of disablity.

While the annual Jerry Lewis Telethon raises millions of dollars for muscular dystrophy, the children in attendance serve as nothing more than cute mascots or lures. Furthermore, by labeling the children as “Jerry’s Kids,” the organizers reinforce the dependency of persons with disabilities. Viewed as victims of a disease, persons with muscular dystrophy become charity cases because they need special care, where, I would emphasize, special becomes synonymous with separate. Many charitable organizations would be the first to defend the fact that such displays are necessary to increase public and cor- porate donations. Longmore (1997) suggests that, in telethons, the differentiation between the “givers and the takers of this world” made implicit in the appeal for donations also draws on moral boundaries, because the appeal “contrasts humane concern for one’s neighbor with selfish preoccupation with one’s private interests” (p. 134). It distinguishes between those who personally shoulder responsibility for civic welfare from those who indulge in self-centred responsibility. Longmore (1997) goes on to point out that, as recipients, persons with disabilities form a third category, a category that is intextricably entwined with social stigma (p. 136). The givers reassure themselves of their individual and collective moral health while the recipients are socially invalidated. Persons with disabilities are ritually defined as dependent on the moral fitness of nondisabled people.” (Phillips, 2001, p. 168)

The campaign by people with disability (PWD) and supporters to pressure the ABC into re-animating ABC RampUp has failed. Despite official approaches to ABC management, an online petition (with more than 17,500 signatures), and in-person public protests, RampUp remains mothballed and a motionless online repository of old stories and commentary.

However, PWD have launched a crowdfunding campaign to raise $80,000 to establish a new website to replace RampUp and again provide a space to ‘feature news, discussion, debate and humour for everyone in Australia’s disability communities’. The ‘A Voice for People With Disabilities’ campaign was launched two weeks ago. Its ‘tipping point’ is $20,000 – that is the stage where the campaign’s proponents say they will be able to build the site and pay contributors for six months.

“During this time we will pursue commercial sponsors to sustain the project for the longer term,” the campaign’s Start Some Good page states.

Dr George Taleporos, the man behind Save ABC RampUp, is driving the crowdfunding campaign, and has embraced the saying: ‘If you want it done right, do it yourself.’

“By supporting this project, you will be playing an important role in enabling people with disabilities to have their say on the issues that affect us the most,” Dr Taleporos said.

“This project is designed to ensure that the important perspectives of people with disabilities and our families are heard and to make real the disability rights motto of ‘Nothing About Us, Without Us’.”

The campaign includes a video that features Rachel Croucher, a woman with disabilities, speaking from her bed at the Austin Hospital in Melbourne. In the video, Ms Croucher starts to explain the dire situation she faces in regard to personal care hours, pressure lifts and the lack of an air mattress when she is abruptly cut-off and gagged. Campaign proponents contend the video represents what has happened to PWD with the closure of RampUp, and it underlines the need for a new site.

The Save ABC RampUp campaign, particularly a sit-in protest at ABC headquarters in Melbourne in June, attracted national media coverage. The crowdfunding push has also drawn media attention. The coverage and a network of more than 1000 people in the Save ABC RampUP Facebook group has helped raise awareness and just over $7,000 so far.

Disability and media academics have explored self-representation by people with disability. One prominent study by Estelle Thoreau (2006) focused on the UK-based Ouch!, a blog and radio show embedded in the BBC’s online presence. Ouch! says it ” … goes behind the headlines of disability news, and also lifts the lid on the little details about being disabled that are not widely talked about.”

Thoreau found Ouch! provided ” … a different type of representation from that offered by the mainstream traditional media, which is argued to result from properties of the medium and the staffing of the site by disabled people.”

She concluded:

“It produces a disability-centred, experience-based, active, and positive picture of disabled people. Within this, disabled people are represented as the majority, while nondisabled people are seen as an ‘other’.”

Proponents of the crowdfunding campaign and the push to establish a site to replace RampUp in Australia agree with Thoreau. Self-representation provides greater insight into the lives, priorities and passions of people with disabilities, and serves to broaden mainstream understanding of disability by forcing it into the unfamiliar space of being the ‘minority’.